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My son Matthew, who is 25 and on the autism spectrum, is the most stoic person I know–so much so that by the time the time tells me he is not feeling well, he’s already really, really sick. Since a recent illness and hospitalization (from which he has recovered, thankfully) I’ve learned of the importance of monitoring the health of adults with developmental disabilities, and teaching them to advocate for themselves.

The topic is a professional and personal passion for Alan Fox, the Chief Operating Officer for The Arc San Francisco,a non-profit service and advocacy organization for adults with autism, Down syndrome, cerebral palsy, intellectual and developmental disabilities and their families living in San Francisco and San Mateo counties. Alan is also the parent of a young son with autism.

Alan has a unique perspective on the state of services for people with autism, both as a leader in an organization that provides services, and as someone who must find them for his son. He oversees a number of programs at The Arc, including independent living support services, employment placement, and ArtRearch, an innovative program that teaches adults with developmental disabilities to be professional artists. He also oversees support and outreach activities to families of loved ones with developmental disabilities.

Alan will talk about his health advocacy work for adult with developmental disabilities at UCSF’s 11th Annual Developmental Disabilities Conference March 8 and 9. This is a conference that I recommend highly to both parents and professionals as it provides an invaluable opportunity for dialogue among experts and families in the care and future of individuals with disabilities.

Q) My son Matthew doesn’t like to tell people when he isn’t feeling well, and by the time his caregivers figure it out, he is really sick! How does The Arc of San Francisco monitor the health of its clients?

A) My son too hardly ever complains of feeling ill and never calls attention to injuries which occurred outside my personal observation. Parents are usually adept at sensing when their child is in pain but a low-grade fever or headache is harder to figure out. When your child has a lot of idiosyncratic behaviors to begin with, an odd behavior that could indicate not feeling well may be hard for even the most attentive parent to discern as unusual.

My wife and I have to play close attention to signals of distress and I visually examine my son for wounds daily. He will hardly ever alert us to an injury. When he does have a wound, we have to carefully monitor it as it heals, because Joe tends to pick off scabs and re-open healed wounds. Some wounds he got when he was a child took months to heal and have left many visible scars. I have often heard that some people with autism are hyposensitive to pain, and while this idea may have some scientific merit, I think it is pernicious because it tends to minimize the urgency of potential health concerns and should be challenged whenever it is raised. For example, I try to over-medicate. That is, on the theory that people with developmental disabilities tend to be under-medicated, at any sign of illness or elevated temperature, I am a lot quicker to dispense the children’s acetaminophen to him than to my neurotypical child.

The Arc monitors the health of adults with developmental disabilities in a few ways. At our Seniors center where we serve elders, The Arc employs an on-site RN who performs basic health surveillance. She has worked in geriatrics for many years and through her knowledge and experience with our clients, is able to provide regular screening and earlier response that prevents many health problems from worsening.

Clients enrolled in our Health Advocacy service are assigned to a single Health Advocate who coordinates that client’s health care. The Health Advocate not only provides case history and diagnostic information to the doctor, but also can provide in-the-moment technical assistance to the client’s clinical care team, who are not likely to have a good command of the health impacts of developmental disability. Health Advocates partner with the clinical care team to ensure that the client complies with medical orders after the visit is over. All Arc staff are certified in first aid and CPR, but our residential services staff become more involved in client health care than other staff. A key idea we teach to our staff is that your gut is a good indicator, so if you think something is wrong with your client, then something probably is wrong.

Q) When my son was in the hospital recently, it was clear that few knew how to communicate with him. How do your clients seek medical care? With caregivers? On their own?

A) That must have been pretty scary for him and for you.

It really depends on the client’s level of development, their ability to express themselves, and whether they have family members in their lives. Communication can be difficult for a lot of people we serve at The Arc and medical issues can make communications harder or even impossible. If family members are present, they likely have a case history available and also ability to communicate with the person. The Arc always seeks to engage family members in a person’s health care team. Often, it is family members who are the first Health Advocates and the ones who will seek medical care for our client.

For clients who do not have family members, The Arc staff often act in loco parentis. We prefer that this be done in accordance with an advanced health directive and encourage people we serve to complete one as a matter of course. Medical care is sought also at times by staff of board-and-care homes where many people with developmental disabilities reside after they no longer live with family members. People we serve will commonly present to their Arc staff problems they need help solving, and this includes problems with their health.

But your question also speaks to the larger issue of access to health care. I imagine most of your readers would be shocked to learn how difficult it is for those who depend on public health insurance to see a doctor. After all, the public is spending itself into poverty on health benefits, isn’t it? Dentistry, podiatry, and other critical services are simply not offered to people who are dependent on public health benefits, including most adults with developmental disabilities. Even when these services were available, they were limited. Medi-Cal would not pay for preventive dental care, but would pay for tooth extraction! Anyone who cares can look in the mouths of the people we serve, and see the dental caries, the inability to chew nutritious food, and the results of years of lack of preventive care. The lack of access to health care by operation of the insurance system is only aggravated by the lack of clinicians who are trained, qualified, and who feel competent to treat people with developmental disabilities as patients.

Q) Many of your clients have aging parents who are overwhelmed by the needs of their adult children. Your thoughts on this problem?

A) This is a big problem and it will only become bigger. For years, we have told parents it was wrong to institutionalize their children with developmental disabilities, we want their children to live with us, as a community. But we have not kept our promise to ensure that the services that were formerly available in institutions would be provided more cheaply, and more appropriately, in the community. Now we are approaching a generational inflection point where devoted parents who have largely shouldered the cost and the work themselves will no longer be able to depend on the ever more meager help provided by underfunded charities like The Arc. If you have a child with a developmental disability, the time to begin planning transition to adulthood should begin by age 16. That gives just about 6 years to make a good plan for what adult life should look like. At The Arc, we have received phone calls from anxious parents on the Friday their child graduated from high school, asking us where they should go on Monday! Parents who have not planned will put their child in an otherwise avoidable predicament.

In my experience, it is relatively rare that parents choose to keep their adult child at home; it is more often the result of a lack of choices. We love Joe unconditionally, but I do not want my child to live with me and my wife as we age! I want him to be independent, happy, and to live in the community like people without developmental disabilities do. I want him to have whatever help he needs to do this. My wife and I know we will never be able to make that happen on our own and we question whether the commitments made to parents like us by the State of California in its laws really have any meaning anymore. We understand life is not fair, but that our leaders are failing us is clear, and unfair.

The one piece of advice I would offer regarding health care is to be sure to find an adult practitioner when your child reaches maturity. While developmental pediatrics is a very well developed medical specialty, there are too few adult practitioners who are trained, qualified, and feel competent to serve older youth and adults with developmental disabilities. Parents need to create more demand for this field and need to ensure their adult child is no longer being treated on a pediatric panel.

Q) It’s almost flu season! Does The Arc encourage its clients to get flu shots?

A) Absolutely! We always emphasize preventive health care and flu shots are an effective prevention method. They are highly indicated for people with developmental disabilities (and their staff) because they often have co-occurring issues or prescriptions which compromise their immune systems and ability to fight infection. The Arc trains its staff on health and safety issues at least every quarter. We have trained staff on how to cough and sneeze safely, how to wash their hands properly, earthquake safety, injury prevention, and other health issues. Our safety committee meets quarterly and reviews worker’s compensation claims and injury reports, develops correction action plans, drills on evacuation, and maintains our emergency procedures. All staff carry client emergency cards with them when in the community and also carry first aid kits.

Q) How healthy are your clients overall?

A) We survey Arc clients annually on their health and they report themselves as being fairly healthy. In 2011, 71% percent said they feel healthy “most of the time.” About the same percentage report it is “easy” to see a doctor or get medicine overall.

In relating to your question above about aging family members, 42% of clients who live with family members say their family members are sick “half the time” or more.

However, The Arc also tracks incidents where clients have a medical emergency, injury, or illness leading to emergency medical response or hospitalization. This measure has significantly increased in the last few years reflecting both the increasing age and fragile health of people with developmental disabilities. In the year ended Jun. 30, 2011, reportable medical incidents increased 79% compared to the year ended Jun. 30, 2010. In the quarter ended Sep. 30, 2011, medical incidents increased 300% compared to the quarter ended Sep. 30, 2010. Medical incidents have been the largest category of reportable incidents for 4 consecutive years.

The sad fact is although the state collects reams of data about people with developmental disabilities, no one really knows how sick or how healthy Californians are with developmental disabilities.

Q) Does The Arc have counseling for nutrition/exercise/wellness?

A) Everyone knows that eating right and exercise are the foundations of good health, but these remain a challenge for most people with developmental disabilities. Many people take medication that affects their appetite, ability to eat, and metabolize food. As mentioned above, poor dental care can lead to poor digestion because the teeth cannot fully perform their digestive function. Diabetes is fairly pervasive as is obesity. Most people we serve at The Arc can afford to buy good food but need help to shop and cook. Sometimes our clients make poor choices about eating and do not take advice about how to lose weight. The people we serve generally cannot afford to go to a gym or buy equipment so their choices for exercise are limited, especially if they need support or encouragement to exercise.

We have found group exercise to have enormous benefits and offer fitness classes to our clients, including clients with ambulation and mobility disabilities. Twice a week a fitness instructor comes on site and does classes so that everyone, with a diversity of fitness levels and abilities, has a chance to get exercise.

The Arc also has a working kitchen where every day our staff teach clients how to shop, plan and prepare meals. Being able to take care of nutritional needs isn’t just about good health. Being able to prepare one’s own food is a critical skill for living independently in the community.

Q) What is the biggest health problem your clients face?

A) Wow, this is a tough choice. I would say the biggest health problem is our clients’ own inability to fully function as partners in the way the U.S. health care system seems to expect of patients. Too much is left to patients to do on their own, for example; maintaining case histories, coordinating specialty care, and complying with treatment plans. Think how hard this may be for you to do for your own health and then consider how hard it would be to do for someone else, let alone someone who may not be able to communicate with you. The Arc and its partners have proposed a reform model that we think would make the system work a lot better for people with developmental disabilities, but so far, we are still working to generate policymaker interest in it!

A generous grant from the Special Hope Foundation, a nonprofit 501(c ) 3 organization,made this year’s meeting possible, (and last years as well).

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NEWS AND UPDATES:

Autism Speaks has recently launched their updated Autism Safety Project. It now includes information about how to prevent sex abuse. CLICK HERE to learn more.

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Did you know that an additional $100 million in trigger cuts to the developmentally disabled community has arrived just in time for the holiday season? The Consumer Action Committee of ALIVE is asking Representatives to make a commitment to protect the Lanterman Act and prevent any future cuts at the HOPE FOR THE HOLIDAYS Rally:

WHO: All Californian’s with Developmental Disabilities, family members, and care providers